I recently had 2 Calprotectin tests
The first one was 554 , the 2 nd is 694.
What I’m asking is are those numbers particularly high ?
My dr said she would refer me to a gastroenterologist ( who I’ve seen before).
My guts are so sore, very loose stools.
Thanks x
I don't know about the numbers. The only feedback I got from my doctor when I had the calprotectin test was that it was fine, and no signs of inflammation. I was never given any numbers. (NHS in UK)
Hopefully this will help but yes those numbers are high and would indicate inflammation in the bowel and referral to gastro:
That would be considered high, which is why you are being referred. It is possible to have high numbers and still have IBS rather than anything else, though it is always good to get checked out. There are other factors that can cause a high reading including diet. For instance high protein, low fibre/carbohydrate diets have been found to increase inflammation.
i was referred to a gastroenterologist as my calprotectin has been raised for over a year now and have suffered with chronic diahorrea and loose stoolsfor the full time. My calprotectin was 600 when first referred in May 2022 by December 2022 it went down to 300. Then in March this year I was really unwell with my tummy and it went up to 1500. I had an urgent repeat colonoscopy and 10 biopsies taken. Still waiting on all my results. I have just had an small bowel MRI study this week which was uncomfortable and the after effects unpleasant. My latest calprotectin result was over 400. I personally would be happier having it checked every 8 weeks as mine fluctuates. I have read around calprotectin, ideally it should be below 50 but have also read that below 200 is acceptable. It is basically a marker for inflammation which is why you get referred to a gastroenterologist. I am currently being treated for bile acid malabsorption but do think I may have an element of slight IBS too. I have lost lots of weight and live on a very limited diet plus I am supplemented with build up drinks from my dietician. I am hoping to get some results by the end of the year. You could well only have IBS but better to be checked out by a gastroenterologist. You could maybe try the low FODMAP diet or look into it and see if your symptoms improve. Hope this helps
Thanks so much for your reply. You sound like you’ve been through a lot. I hope you get the results from the biopsies soon, waiting on results is such an anxious time. How did they test for bile acid malabsorption?
I was diagnosed with Lymphocytic colitis a few years ago after a colonoscopy ( no calprotectin test). After a few months on steroids it seemed to calm down. But now I feel so sick, like you very limited diet. I do low Fodmap as much as possible. My worry is that the colitis has returned hence the high calprotectin number
I also take Ensure protein drinks as prescribed by the gastroenterologist ( years back) I have found they make my diarrhoea worse
I’m at a loss tbh
thank you so much for your kind words, I hope I get some results soon. My symptoms actually are very similar to bile acid malabsorption and also microscopic colitis, part of me thinks I may have both. I am actually still waiting for a sehcat test for bile acid malabsorption, i have been waiting since December 2022 but there is a 9 months waiting list. I have been placed on a drug used for bile acid malabsorption and it controls my symptoms a bit but still suffer with loose stools plus urgency and unpredictable bowel movements. My gastroenterologist is hoping to get bowel movements down to once a day but I am usually 2 or 3 times a day even with the medication. Imodium has little effect on my symptoms. I had enquired about steroids as my calprotectin keeps getting really raised but my gastroenterologist wantedto do more tests first. I do a little low FODMAP when possible but I struggle as some foods are ok for me one week and then they are not the next, so difficult to get a normal regular diet. I have fortisips and I think my body can tolerate them to a point. I really am unable to put any weight on and basically look anorexic. I cut out most dairy products last July and so far haven’t gone back to them through fear of my body not tolerating them. I would guess in your case that there will be a possibility of your colitis returning so it is good you have been referred. I was under the impression that colitis never goes away but probably flare up from time to time which may be your case. Maybe you will need steroids again to feel better but I do hope you get some answers soon.
Totally relate to the your food/ diet experience. Not knowing what food may trigger the bowel. Like you I cut out food groups one by one, losing weight and unable to digest food properly. My dietitian is lovely but she don’t think she fully grasps how hard it is.
Yes I did know that colitis can and probably would return but this time is much more severe. Although after the last course of steroids I became extremely constipated which gave me a new set of problems.
A vicious circle.
What other tests can your gastroenterologist do other than the usual ones? With your high levels of inflammation a course of steroids might be on the cards.
You should get your results soon , are you in the UK.
Good to hear back, I am pleased I am not alone with the experience of poor diet and not really knowing what to eat. I have tried a variety of diets but none of them so far have helped. My dietician is lovely but as I haven’t a full diagnosis she is at a loss on how to guide and advise me. I don’t think anyone can grasp how hard it is to be in this position unless it happens to you. I am sorry that your symptoms are much worse this time, fingers crossed you get answers and management quickly. It may still possibly be the colitis as the symptoms may get worse as we get older but unfortunately I don’t know much about it really at the moment. I think I live in hope that my gastroenterologist recommends steroids but as such have no results as yet. I agree it is a vicious circle although I think I could possibly manage the constipation better than the loose stools and diahorrea at the moment. I have had all manner of tests, I have had a FIT Poo Test, Calprotectin done several times, had two colonoscopies, a gastroscopy, a capsular endoscopy, small bowel MRI Study, had several Faecal Elastane’s (tests the pancreas), have had several C&S (to check for infections). I am awaiting my Sehcat test for bile acid malabsorption but think that may be October. I am not sure there are any more tests that can be done, I have had most. My biopsies from first colonoscopy showed inflammation and obviously my calprotectin is raised which indicates inflammation too. I have slight inflammation of my stomach but so far most of the tests have been normal. I am awaiting the biopsy results from my second colonoscopy and the MRI study. I feel at a total loss but find my symptoms are really life limiting and I don’t think anyone understands this. I am indeed based in the uk are you based in the uk? I hope all this information helps and I hope I find something out soon
Meant to ask do have a IBD nurse?
Yes Uk , N. Ireland.
unfortunately I only have my GP, Gastroenterologist and dietician on board, no one has mentioned so far about seeing an IBD Nurse. My GP did ask the gastrointestinal team to treat me as a crohns or colitis case back in October 2022 but this fell on deaf ears. I was even admitted to hospital for 10 days in November due to my extremely low weight but have never seen an IBD Nurse as yet. I was provisionally diagnosed as post infective IBS in December 2022 but the medication recommended didn’t work and hence I ended up being very unwell in March plus my calprotectin went up to 1500. So at the end of April I got the provisional diagnosis of bile acid malabsorption but obviously I am still waiting for all my biopsy and test results plus still have lots of inflammation present in my bowel which I have had for a year. Regardless of what medication I take or food I eat my body physically can’t form a stool. I just get soft, mushy and runny bowel movements it gets really frustrating. Plus I get the unpredictability and urgency, need to be near a toilet most of the time day or night, it is so life limiting. I would like to try steroids just to see if they make a difference in my symptoms. Good to know you are uk based
Hi. I've lived with IBS since my tens and I'm 62 now. I've never heard of a Calprotectin test. Very interesting to hear about it.
I've done the FODMAP diet and it's not practical nor intended for long- term diets. It's meant to determine what your body is unable to tolerate. But once I heard about gluten causing gastric issues, I went gluten free.
It took awhile because it takes years to remove gluten from the body, but I started feeling better. Eventually I stopped curling up in a ball in bed and on floor by the toilet. So many times I've crawled to bed, passing out a good possibility. So many times I slept in the tile floor in the bathroom.
As long as I don't eat anything with gluten, I avoid that. I still have bad esophageal reflux and digestive pains at times. But now, it's not daily and severe.
It's a suggestion. If you haven't tried it, and it will take years, it might be worth trying.
Hugs.
so
I did reply but, the only word to appear as a reply was SO , please ignore lol
lunderstand wot your fell like iv had this for years some times I’m in bed with pain and going to the loo all the time with diyarea but the only thing that’s stop me frome going to the loo is by taking morephine or cocodamolthe pain I’m in all the time I think iv had every test in the book some days I fell so depressed I did have a full body scan which pick up a nodual on my left lung and tonsils which I had removed but I had to have part of my left lung remove last September which sadly was cancer but no treatment needed thay taken it all away so I no how you fell with keep going to the loo and not eating wot you like so iv had that for 20 years sorry to say I don’t no we’re to go good luck eney way I’m now 78
Sorry to hear you have been so unwell. It’s seems we all have more than one health issue. I don’t think my doctor would prescribe morphine or even Co-Codamol
I just want something to calm my gut down so that I can live some sort of a normal lifestyle. Still waiting for my referral to gastroenterologist.
Unfortunately your colitis could be back. This can happen sadly but good luck with the tests xxx
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